A Qualitative Approach to Investigating Appointment Attendance at a Hospital-Based Pediatric Sickle Cell Disease (SCD) Clinic

Background: Effective management of SCD requires regular appointments to monitor health status, manage symptoms, and prevent complications, but visits are often missed. Previous studies identify barriers like transportation difficulties, scheduling conflicts, and lack of childcare as significant obstacles to visit attendance for chronic disease care^1,2. Facilitators like strong healthcare support systems and perceived benefits of medical visits improve attendance rates³. Understanding facilitators and barriers is crucial for developing strategies to enhance follow-up and improve health outcomes for SCD ⁴.

Objective: To expand on previous quantitative work⁵ investigating the facilitators and barriers of SCD follow-up appts.

Methods: Guided by a completed quantitative survey, a qualitative motivational interviewing-style questionnaire was developed, focused on the Health Belief Model (HBM). Questions centered around perceived costs of visits (i.e. transportation, energy/time), perceived benefits of visits, and future clinic attendance intentions. Purposive sampling based on criteria (child's age, genotype, % failed visits, distance from clinic) yielded a sample representative of our clinic population. Interview data was analyzed by coding and categorizing responses to identify common themes.

Results: 20 patients and caregivers were interviewed. 40% were caregivers for patients aged 1-5 yrs, 40% for those 6-10, and 20% were caregivers or patients of 11 +, a distribution akin to our clinic population (36% 1-5 yrs, 37% 6-10, and 27% 11+). 50% of interviewees attend our local clinic, and 50% are seen at 1 of 4 outreach clinics. 70% of study patients have SS, 25% SC, and 5% SB⁺ thal, with our clinic population of 62% SS or SB⁰ thal, 32% SC, and 6% SB⁺ thal.

Visit non-attendance ranged from 0% to > 50% of appts (40% missed ≤ 10%, 25% missed 11-30%, and 35% missed > 30%). Common appt barrier themes were transportation, work/school conflicts, insufficient childcare, and forgetting the appt. 60% of outreach clinic patients, as well as 40% of local clinic patients ranked transportation for appts as slightly or very difficult, verifying it as a key barrier in all circumstances. On a question about the best way to remind patients of upcoming appts, preferences were 36% text; 29% mailed letter; 21% phone call; 7% EMR app (My Chart); and 7% email.

Common appt facilitator themes were recognizing appts as important, concern for child's health, the clinic being accommodating, and getting peace of mind. General health motivation was positively correlated with intent to keep appts in both the quantitative and qualitative parts of this study. 80% of respondents believed they would hardly ever miss an appt, and 95% believed they can get around most barriers.

Unlike the quantitative portion, no specific questions were asked in the qualitative portion regarding perception of disease severity or susceptibility to disease complications. However, two respondents mentioned these in response to other questions. One, with a high perception of disease severity, stated that “appts can make a difference [between life and death] so making them a priority helps not only her [the patient], but my mental health.” This respondent's child had missed 8% of appts. The other respondent may have a less severe perception of SCD and his child's susceptibility to its complications, saying “I know my daughter will be okay.” He said that it is not usually difficult to bring the child. This child has missed 23% of appts. Both had a high degree of intention to keep future appts.

In the open-ended question format, respondents mentioned benefiting from what is learned at the visit (overall knowledge of SCD, preventive care) more often than from what was actually done (labs, PE, etc.). They valued relationships with clinic staff and help received with some of the barriers to appt attendance.

Conclusions: Although the interview focused mainly on perceived costs/ benefits of visits and future attendance intentions, respondents also spoke to individual general health motivation, and perceived susceptibility to, and severity of SCD (remaining facets of the HBM). The qualitative nature yielded individualized responses - increasing knowledge base, preventive care interventions, and close supportive relationships with staff as primary reasons appts were kept. We will explore these facilitators and the effect promoting them has on attendance.

No relevant conflicts of interest to declare.